Clinical Trial begins

Well, after all the wait and worry and undertaking a various array of tests, rather like an MOT of my anatomy, I am now given the all clear to start my clinical trial come 24 November.

I will be in hospital most of the day as they take bloods from me throughout the day to see how the drug gets into my blood stream.

It has been a stressful few weeks from my initial meeting with Professor Stebbings and here we are weeks away from DDay and a whole new ball game. I am scared, excited and intrigued as to how this drug is going to affect me. I wonder if any of you out there have been through a clinical trial before and if you have what advice you can offer a mortal soul like me.

I will keep you all informed once I begin and how things are in the hope it may help other people who are put in such a position like me.

Thankyou for reading this conversation.


Hi Cookie,

It’s good to hear from you, thanks for the update. That’s great news that you’ve got the go-ahead for the clinical trial.

I’ll keep my fingers crossed that it all goes well for you. Let us know how you get on.

Thank you Priscilla. I am scared, intrigued and apprehensive as to how I will cope but I have a remarkable husband who has been with me from day one and I would not be where I am today if it were not for him and Sue Ryder. The Palliative Care team has helped me greatly over the years to come through some difficult times.

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Hi Cookie
Great news! I’ve been thinking about you, wondering how you were getting on.
John was on a Clinical Trial soon after being diagnosed with matstatic Colon Cancer. He was given Avastin, alongside Oxilaplatin and 5-fluorouracil (also known as 5FU) He had a Hickman line fitted so he wouldn’t end up like a pin cushion and it also is more convenient for the nurses. At the end of the chemo session a small pump was fitted to the hickman line with the 5FU drug which was released over 48 hours and the District nurse had to come home to remove it and flush the line to avoid infection.

Not everyone has the same side effects - the most common are: tiredness; feeling sick; sore/dry mouth. For the first two days following each chemo Christies gave a couple of anti sickness tablets and a couple of steriods (we called these the happy pills) The steriods helped with the tiredness for the first couple of days.

We were told to check his temperature twice a day every and if there was any change to let them know immediately. Unfortunately John suffered from a lot of side effects one of the main ones was neuropathy - Let the hospital know if you have tingling in your hands/feet.

You’ve probably already been provided with infomation by your hospital. However, There’s a booklet called ‘Side Effects And Symptoms’ and several others i.e. Diet for Cancer Patients; Carers etc. available from the hospital or Macmillan website Telephone: 0808 808 00 00

We tried to keep John away from family and friends with colds and infections. Also were very careful and avoided certain dairy products; raw eggs, live yoghurt, cream cheese etc.

As I said each chemo and individual has it’s own side effects. Just be careful and don’t hesitate to contact the helpline if you feel unwell or have any doubts.

Good Luck Cookie and keep posting your progress.
Libby x

Dear Libby

Thank you so much for your response which I read with great interest. It was most helpful and kind of you to go the trouble of writing such a detailed note to me. They have said that the most common side effects to date on the trial are tiredness, sore mouth and dry skin. I am hoping that is all i may experience. I hope I dont get what I had when I was on Everolimus, that was horrendous for me. But I know other ladies who have been on the drug and have sailed through.

It is going to be a hard few months as I come to terms with the drugs and regime that is to go with the trial, particularly with respect to what foods I can or cant eat.I am nervous and we are to keep a diary of how we feel each day and any untoward reaction we might incur.

My husband and I went on a small break for some rest and relaxation as we knew come a week Tuesday, all hell will break loose as it were when I begin my trial. I hope your John is okay now and is settling after all he has been through.

Thank you for thinking of me and taking the time to write. It does mean such a lot.

Regards and much love

Dear Cookie
Just wanted to say I’m thinking of you and hope you’re coping well with the Clinical Trial. Hope you and your husband have a peaceful Christmas.
Love, Libby x

To anyone who is thinking of partaking of a clinical trial, it is not as bad as the literature makes out. In reality its just like taking any normal chemotherapy. Some of us will sail through it whilst others will sadly cope as well. I have already had a series of side effects to these drugs but have been given a bag full of meds to help counteract the side effects so they are manageable if nothing else. If things get debilitating then that is a different story altogether.

I have been lucky with the new hospital I am at that their care to date has been top notch as it were. Couldn’t fault them. I have a CT scan due between Xmas and New Year and so it will be interesting to see if the trial drugs have made a difference or not. I am a little nervous to be honest but hopeful.

Have a great Xmas everyone and much love to you all that you have a quiet Xmas without any problems healthwise.
Cookie 17

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